Choroideremia Research Foundation
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Choroideremia Research Foundation
@curechm.bsky.social
22 followers 22 following 88 posts
Funding research, raising awareness, and advocating for those affected by choroideremia—a rare inherited retinal disease that causes blindness.

www.curechm.org
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curechm.bsky.social
FDA Unwraps ‘Plausible Mechanism Pathway’ for Personalized Therapies

www.biospace.com/fda/fda-unwr...
FDA Unwraps ‘Plausible Mechanism Pathway’ for Personalized Therapies
The plausible mechanism pathway "could accelerate gene therapy/editing development," analysts at William Blair said Thursday, while adding that additional clarity is needed.
www.biospace.com
November 13, 2025 at 6:56 PM
curechm.bsky.social
A Science and Research Update with Dr. Jess Thompson
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Parents of CHMers Chat - A Science and Research Update
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
November 11, 2025 at 3:37 PM
curechm.bsky.social
NEW! Parents Chat:
Our first session will be A Science and Research Update from Dr. Jess Thompson. He will share the latest updates in CHM research and answer your questions about what’s ahead for the community.
Monday, Nov 10th | 8PM EST - Register to join!
curechm.salsalabs.org/parentchat11...
Parents Chat: Join other parents in the CHM community for discussions about life, care, and hope for the future.
November 5, 2025 at 7:55 PM
curechm.bsky.social
Ever wondered whether a guide dog might be right for you? CHMers Bob Hrdy, Mike Martens, and John Trott recently shared their personal experiences, from the decision to apply to training and daily life with their canine partners.

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Have You Ever Thought About a Guide Dog? CHMers Discuss the Pros and Cons
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
November 5, 2025 at 3:17 PM
curechm.bsky.social
Team CHM crushed the 2025 Marine Corps & NYC Marathons! Every mile raised awareness & support for CHM research—your dedication inspires us all. #TeamCHM #CureCHM
Picture collage of Team CHM runners at the 50th Marine Corps Marathon and TCS NYC Marathon.
November 4, 2025 at 9:34 PM
curechm.bsky.social
Patient Advocacy: Why It Matters for the Choroideremia Community

Learn how patient advocacy helps shape research, influence policy, and create meaningful change for the CHM community.

youtu.be/kFDO6UtYZwo?...
Patient Advocacy: Why It Matters for the Choroideremia Community
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 31, 2025 at 2:26 PM
curechm.bsky.social
Stay connected with us beyond BlueSky! Follow the Choroideremia Research Foundation on LinkedIn for the latest research updates, events, and more: www.linkedin.com/company/cure...
Choroideremia Research Foundation - Cure CHM | LinkedIn
Choroideremia Research Foundation - Cure CHM | 1,758 followers on LinkedIn. Saving Sight is our Vision! | The Choroideremia Research Foundation is an international nonprofit organization that raises r...
www.linkedin.com
October 28, 2025 at 8:38 PM
curechm.bsky.social
When his son was diagnosed with Choroideremia, Dr. Tom Barker, UVA professor & CRF Research Committee Member, redirected his lab’s focus. He’s not waiting for a miracle; he’s working now to slow the disease’s progression & buy his son more time.

news.virginia.edu/content/diag...
Diagnosed with an incurable disease: How a UVA professor is fighting for his son
Thirteen-year-old Leo Barker’s father, Tom, upended his research to stall a rare genetic illness that strikes 1 in 50,000 people.
news.virginia.edu
October 23, 2025 at 3:31 PM
curechm.bsky.social
Choroideremia Research Foundation Awards Alice Y. Zhang, MD, the 6th Annual Randy Wheelock Research Award

www.einpresswire.com/article/8602...
Choroideremia Research Foundation Awards Alice Y. Zhang, MD, the 6th Annual Randy Wheelock Research Award
CRF honors Dr. Alice Y. Zhang with the 6th Annual Randy Wheelock Research Award for advancing patient-focused outcomes in choroideremia research.
www.einpresswire.com
October 22, 2025 at 1:39 PM
curechm.bsky.social
A huge thank you to Tara Andrus Nordgren & her family for organizing the Nordgren Family 5K in Weiser, ID! Your dedication & hard work, along with the amazing support of your community, helped raise over $10,000 for the Choroideremia Research Foundation (CRF).
Over 100 community members of Weiser, Idaho come together to support the CRF at the Nordgren Family 5K.
October 21, 2025 at 9:02 PM
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Join CRF’s Eric Hartman on Oct 23 to learn how patient advocacy drives research, legislation & support for the global Choroideremia community! Click the link to register.
curechm.salsalabs.org/patientadvoc...
Patient Advocacy: Why It Matters for the Choroideremia Community
What is patient advocacy and why is it important for the Choroideremia global community? Come join Eric Hartman, the CRF’s director of advocacy, to discuss his role for advancing our foundation's miss...
curechm.salsalabs.org
October 21, 2025 at 6:17 PM
curechm.bsky.social
CRF proudly presents the 6th Annual Randy Wheelock Research Award to Dr. Alice Y. Zhang of UNC–Chapel Hill for advancing research in choroideremia (CHM).
Neal Bench, CRF President, awarding Alice Zhang, MD the 2025 Randy Wheelock Award. They are posing with three men from the UNC Ophthalmology team.
October 17, 2025 at 3:39 PM
curechm.bsky.social
Course to a Cure Cole Schroeder golf outing was a huge success! ⛳ 12 volunteers & 84 golfers at Westchester GC raised $6,200+ for CHM research! #Choroideremia #GolfForACause
Group of 84 golfers who attended Course to a Cure fundraiser. Group of four guys raising their drinks and giving cheers on the golf course. Cole Schroeder Golf Outing Est. 2025 Course to a Cure Saving Sight - Building Hope Banner
October 16, 2025 at 8:14 PM
curechm.bsky.social
October 15th marks White Cane Safety Day—celebrating independence, mobility, and confidence for people with vision loss.

#WhiteCaneSafetyDay #Accessibility #CureCHM #VisionLossAwareness #Choroideremia
An image of a crosswalk with Cory MacDonald posing with his white cane. Text that says October 15, 2025 White Cane Safety Day. Celebrating independence, awareness, and mobility for people who are blind or visually impaired.
October 15, 2025 at 3:15 PM
curechm.bsky.social
Huge thanks to Michelle Holbrook & family for their CHM FUNdraiser #6! Amazing turnout, energy, & generosity supporting the CHM community. #CureCHM
Group of 30 people who attended the fundraiser to work out at Good Movement Studio in Park City, Utah. The group is standing outside with mountains in the background. Michelle, Damon, and Brixton Holbrook posing together by the juice and coffee station.
October 14, 2025 at 6:38 PM
curechm.bsky.social
Save the date! The CRF International Conference is coming June 23–26, 2027 at the Drury Plaza Hotel, Orlando Disney Springs!
Text: Save the date! CRF International Conference at the Drury Plaza Hotel, Orlando Disney Springs. June 23–26, 2027. Pictured: Kathi Wagner, CRF Executive Director, and Drury Hotel Team Members, including CHMer, Patrick Heafner.
October 10, 2025 at 3:35 PM
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🌍 World Sight Day 2025! CHM research needs your support to fund labs, trials & breakthroughs. No cure yet—but hope drives progress. 💙 Donate: curechm.salsalabs.org/donate/index...
Image: Dark blue background with graphic of continents, the CRF logo, and an eye icon. Text: 2025 World Sight Day: Raising Awareness for Vision Loss & Global Eye Health
October 9, 2025 at 5:22 PM
curechm.bsky.social
Accessing Local Disability Services with Corbb O'Connor, National Federation of the Blind of MN

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Accessing Local Disability Services with Corbb O’Connor | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 8, 2025 at 2:41 PM
curechm.bsky.social
CRF Research Spotlight: Panel Discussion / Q&A with Ben Shaberman, Dr. Kathleen Boesze-Battaglia, Dr. Malia Edwards, Dr. Joseph Porter, and Dr. Ian MacDonald

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CRF Research Spotlight: Panel Discussion & Q&A | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 8, 2025 at 2:18 PM
curechm.bsky.social
Navigating Your Ophthalmology Visit with Dr. Rachel Huckfeldt

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Navigating Your Ophthalmology Visit with Dr. Rachel Huckfeldt | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 7, 2025 at 8:41 PM
curechm.bsky.social
Female Carriers of Choroideremia with Dr. Sena Gocuk

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Female Carriers of Choroideremia with Dr. Sena Gocuk | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 7, 2025 at 8:22 PM
curechm.bsky.social
Gene Therapy Updates with Dr. Robert MacLaren
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Gene Therapy Updates with Dr. Robert MacLaren | 2025 CRF International Conference
YouTube video by Choroideremia Research Foundation - Cure CHM
youtu.be
October 7, 2025 at 8:03 PM
curechm.bsky.social
October is World Blindness Awareness Month! At the CRF, we are committed to helping those affected by choroideremia (CHM) through research, patient support, and community initiatives.

Support our mission: curechm.salsalabs.org/donate

#WorldBlindnessAwarenessMonth #CureCHM
Choroideremia Research Foundation Logo. Text: October is World Blindness Awareness Month Icons: Guide Dog, Eye, Blindness Awareness White Ribbon, White Cane
October 6, 2025 at 6:09 PM
curechm.bsky.social
Are you a person living with an Inherited Retinal Degeneration?

Please help Retina International by completing an online survey that aims to understand the mental and emotional impact of IRDs. This survey will close on 15th November 2025.

retina-international.org/survey/
Retina International
retina-international.org
October 1, 2025 at 1:48 PM
curechm.bsky.social
Huge thanks to Jess Thompson and his cardiac practice for sponsoring the Mesa Sprint Tri and sharing these great shots! Grateful for your support and for helping spread CHM awareness.

#TeamCHM #MesaSprintTri #CureCHM
Group photo of participants in Team CHM gear at the Mesa Sprint Tri Group of people holding curechm.org towels by the pool at the Mesa Sprint Tri
September 29, 2025 at 4:50 PM